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The “Mommy Guilt” When You Have a Child With a Rare Disease

Emergencies in my baby girl’s life were something of a biweekly event. Starting at about two months of age, I rushed my daughter to the Children’s ER often for gastric issues. These episodes consisted of her not being able to keep formula/food down, refusing to eat and screaming in pain that could not be comforted. I was told to switch formula time and time again until she was nearly 7 months old, at which time it was suggested she may be lactose-intolerant and we began a soy-based formula. But even then, she continued to have issues with her digestive system. and didn’t hold solid foods well.

My daughter is now seven and still has gastric/digestive problems. We’ve since learned she is NOT lactose-intolerant. In fact, last year, she was diagnosed with a rare connective tissue disorder called Ehlers-Danlos Syndrome and she has type 3, otherwise known as hypermobile Ehlers-Danlos Syndrome (hEDS). I’ve learned to stop rushing to the doctor or the hospital due to her headaches, sore throats and stomach pains. In some ways, her being diagnosed with a rare disease has relaxed me when it comes to her medical treatment. The more I learn about hEDS and figure out her unique set of symptoms and their severity, the less I tend to freak out about certain aches, pains and other things that used to panic me.

Yet, recently, I learned another lesson: that having a child with a rare disease will keep me second-guessing my choices regarding her care; that I’ll feel guilty about my decisions surrounding her symptoms no matter what I decide; that I’ll think I’ve made the wrong choice for her no matter what.

I came to this emotional revelation a few weeks ago when she began complaining of stomach pains again. I gave my pat response I’ve learned over the years and on a Sunday evening, we went through her bed time routine as usual even as she persisted that her stomach hurt. The next morning, after she was dressed for school, I happened to caress the side of her head and realized she was warm. Her temperature was only 100.3 but I called school to let them know she wouldn’t be there. She was still saying her stomach hurt but her tone had changed to one of intense pain and urgency. I called her doctor and they agreed to fit us in later that day. I gave her some Motrin and let her lay down. Less than an hour later, I went in to check on her and found her white as a sheet, teary eyed and burning up. Her temperature had risen to nearly 103.0 even after a dose of medicine. I called the doctor and they said to take her to the Children’s Hospital immediately.

After several tests and an x-ray, I learned that she was severely impacted. I was given a prescription for laxatives to give her twice a day for a week and told to continue maintenance laxatives so this didn’t happen again. The two lead doctors said this could have been related to her hEDS but we can’t know for sure. I sat there waiting for our discharge papers feeling silly all over again. I’d thought she had appendicitis or a similar serious condition and here she was constipated, albeit significantly. When one of the doctors came back in, I told him I felt ridiculous and he said, “Having a sick child can make you doubt yourself. Don’t let it. You’ve done the right thing.” It was then that I realized I was still jumping to conclusions that were far more serious than the end diagnosis (and thank God for that!); I was beating myself up for not taking her stomach pain seriously enough, for not taking action the night before even though if I called the doctor over her every stomach ache, it would be a daily, unnecessary occurrence.

Rare diseases are tricky enough. Having a child with one is an emotional entanglement of worry, self-doubt, guilt, fear and feelings of inadequacy. I’d rather rush to the hospital and find out it’s simply a symptom of her hEDS than not act on it at all. But I also can’t rush down there each time something comes up. I feel jerked around by her EDS at times, like it’s playing a game and I can’t win no matter how hard I try. There’s one thing I know for sure though: that my daughter is uniquely wonderful; that’s she’s strong, creative, funny, intelligent; that she’s loved; that she brightens my life and many others. Her having a rare disease is a tiny, miniscule part of who she is. But it makes up a huge part of my emotional focus as her mom.

2 thoughts on “The “Mommy Guilt” When You Have a Child With a Rare Disease”

Let me just start with saying that she’s lucky to have you. I didn’t have a parent who knew about my diagnosis nor cared about the pains I constantly in. The support is so important, especially with hEDS which is more misunderstood than the other types as there is still no knowledge of which gene is mutated.

EDS is a rollercoaster. There will be good and there will be bad. It’ll be hard for her, it’ll be hard for you. Take the good times and treasure them, and teach your daughter the importance of honesty and pacing. That she’s not alone, even if it sometimes feels like that. No matter the pain, no matter the issues she gets, she can work around them, and so can you. EDS is not your work against or despite. You work with it. You learn to be creative and find ways to do things your way so it won’t cause you as much pain.

Sending thoughts to you and your whole family. From one Warrior, to another.

Thank you, Anny! Yes, it IS a rollercoaster! Good description! Since we both have it and I’m dedicated to learning more about the disease, my symptoms and her symptoms, it helps us both cope and continue to move forward no matter what!
Thank you so much for taking the time to read and for sharing your thoughts and comments!